Yup, as usual, I spoke too soon! Weather back to "normal" here in beautiful Michigan. Let's see - so far today we have seen a little snow, a little frost, a bunch of wind, buckets of rain, earth shaking thunder and lightning and hail. Yup, that seems about right for March. I talked to my Mom yesterday. She said it was 82 in Oklahoma and her car air conditioning wasn't working. Just wait till she gets back! At least the pollen is down and I can breathe. Oh, and no tornadoes!
I was looking at the community college class list the other day and they are offering an online class on spiffing up your blog. Since I started this I've been paying a lot more attention to other blogs and how nice they are with all the linkies and blinkies and all. Plus, I understand that there is a way to put pictures where you want them instead of just uploading them and seeing where they show up! So, think I will take the class and maybe fairly soon this will start looking a lot better. I love the computer, but was not raised on a computer like kids are now and I still feel a little intimidated by all the web stuff. But I'm willing to learn.
In the back of my mind, I have a "bucket list." Things that I would like to do when this situation at home changes. Right now everything I do goes through the filter of what can K do? or how will this effect him and his stability? K has been telling everyone lately that we are going down to Gulf Shores Alabama. I totally understand this - I would LOVE to get away for a week and enjoy some new scenery. And shrimp!!! But I took him to Gettysburg, Pennsylvania, another of our favorite spots, last fall and it didn't work out so well. As soon as we got there, he wanted to come home. He wanted to stop at Hershey, so we did. He was in the factory store about 15 minutes, didn't want to do the tour or any thing else. Bought some chocolate and started home. And he argued all the way home that I was going the wrong direction. Couldn't understand that all the signs said West - yes, he read them, yes, he knew what they said but obviously all the signs were wrong and I should turn around and head the right way - at every exit. Gulf Shores, Alabama is an 18 hour non-stop drive. No way am I going to drive to Gulf Shores. I've tried to compromise with driving down to Nashville and looking around where we used to live and work. He'll agree and then the next thing I know he is telling some one about our upcoming trip to Gulf Shores. You know, I do want to do with him the things that would make him happy. He really doesn't know what that might be and so he wants to relive enjoyable times from the past. He has no comprehension of the fact that these things no longer are things that he really wants to do.
K has always been a golf fanatic. I try every day to suggest that he go out and play at a course he has enjoyed in the past, but he always has an excuse. I think he is afraid he won't be able to play golf. I so hope he is wrong. I need those golf days - when he is occupied with something for a few hours.
So, anyway, back to the bucket list. Ever since I saw J's pictures of swimming with the sharks, that has looked like a good idea to me. Maybe I could start with dolphins, but still, it looked great! I'd like to take a zip line somewhere. A Can Am Roadster is also starting to have a real appeal to me! If I knew I wouldn't break down somewhere, I'd like to put a Teardrop trailer behind the Buick and visit National Parks. I don't know what I'll do, but you know, it is fun to think about crazy, fun things to do. Maybe I ought to start by buying a lottery ticket for that $620,000,000. Half a billion dollars in one fell swoop! Wouldn't that be something.
On a more serious note - K's neurologist has started him on Namenda. It is the first med that they have seen positive results with for FTD. It won't slow the disease, but it might help with some of the behavior issues. K was on Aricept before he was diagnosed and I actually think it made him worse. I'm so grateful that our insurance is picking up the tab on this one. So far we have been incredibly fortunate with our insurance. Hope we can do as well after Medicare kicks in in August.
Gotta go. One last good thing in our house - The guy I hired to take care of the yard this year came yesterday! The yard is mowed, trimmed, edged and blown clean!! Yes!!! What a relief that I don't have to worry about the yard this summer! And he does snow removable as well! Guess I really did hit the lottery!
Friday, March 30, 2012
Wednesday, March 28, 2012
Can it be spring?
It's another beautiful day in Michigan! Where's the snow? Not that I'm complaining! The sun is shining, the temperature is wonderful. The wind is blowing like crazy. All the pear trees are in bloom, as are the forsythia and the daffodils. The lilies are growing like crazy and the shoots on the roses are 4" long. Crazy weather.
I try to take advantage of K's ocd to the best of my ability to steer him toward healthy activity. But some times it really backfires on me. Today, for instance. We've been walking and he really enjoys walking to the end of the sidewalk in front of our house. If only he could. When the announcement comes, "Okay, dear, I'm going for a walk," I know we are in for an hour or more of him going out, coming in to tell me "That's not going to work," going back out telling me "Okay, dear, I'm going for a walk," and coming right back in to say "That's........" You get the idea. An hour later, he might have been able to take a 10 minute walk. When I go with him, we walk together to the end of the walk, but when we get back, he starts his routine again. Also, he gives me the traffic report on each round. I always hated the kids coming in and out of the house - this is much worse! The spring on our 4 year old garage door broke last year. The repairman was mystified - I wasn't!
When I saw Dianne, my counselor, Monday, we were talking about how the repetitive nature of K's behavior can be intolerable at times. I know everyone else gets tired of the same story over and over, but I hear those stories 20-30-40 times a day. Which thrown in with the walks, the traffic and the reports each time a female with a bouncing pony tail comes by, (the Track team is training right now, oh joy) it is enough to drive me crazy. But, I'm not. I've never been a terribly patient person. Okay, okay, I hear you laughing! But, somehow, from somewhere, I find the strength to be patient and really not so bothered most of the time. I know where that strength comes from and I thank God every day because I know that on my own I could never do this.
Dianne said something pretty profound this week. We were discussing K's new vanity and his heroic stories in which he is the star. Basically she said that at the end of our lives we all look back at our lives - our regrets and our failures as well as our accomplishments and successes. In K's case, his brain is dieing even though he is still physically strong. But without the frontal lobe filters, rather than regrets, he remembers his past as he wished it would have been. Although I understand this, it makes me sad. In his own right, K was heroic. He (and his brothers) overcame a disadvantaged childhood many could not. He joined the Marines during the Vietnam War and did what he felt was his duty as a citizen. He never fell for Timothy Leary's turn on, tune in, drop out retoric. When he completed his time with the Marines, he put himself through college with the GI bill, earning a degree in microbiology. He worked several different jobs early on. When I met him, he had just gotten a job with Ford Motor Co at the glass plant. Within a few years he worked his way up from taking EPA samples, sitting on top of the stack all day and then processing the samples, to being a manager in the fabrication building where tempered car windows were made. At that point, he hit the glass ceiling - he had advanced as far as he could without an engineering degree. He left Ford and went to work for a competitor, but within a year, we were back in Tulsa because they realized that it was his expertise that had kept the presses running and he was desperately needed. He crashed through the glass ceiling. and continued to advance throughout his career. K did more than he had ever expected he would when he was a young Marine. I'd say his brothers could say the same about themselves. Those were all highly intelligent young men. I know now that his Mom probably was already started down this path of dementia before I met her. I wish I had known her earlier. She must have been a hell of a mother. I knew his Dad longer - he was a quiet spoken man much like his sons. I know that he was a hard worker. And I know his son. That's enough for me to understand the quality of people they were.
It does make me sad sometimes that there are people in our lives now who never knew him before this disease started changing him.
Another idea Dianne and I came up with was to get him to start journaling orally some of his stories. We thought that it might give me a little break from his storytelling if he was busy doing this. Another back fire! He has recorded one story so far and he loves it! So much so that he will sit and play it over and over and over for me.....I tried to get him to plug in the earphones so he could hear it better (and I couldn't hear it at all). But he figured that out pretty quickly -"But then you can't hear it!" Don'cha know!!!
My DD sent me a wonderful book this past week, Dementia Caregivers Share Their Stories, A Support Group in a Book. I'll probably share some of it with you next time. I found this bit to be so helpful: "Caregivers need permission to be human and fallible. When we make mistakes during out caregiving
Thanks, DD, for a book that is bound to be a great comfort and resource! Thanks, I needed that!
Peace and love, Mary
I try to take advantage of K's ocd to the best of my ability to steer him toward healthy activity. But some times it really backfires on me. Today, for instance. We've been walking and he really enjoys walking to the end of the sidewalk in front of our house. If only he could. When the announcement comes, "Okay, dear, I'm going for a walk," I know we are in for an hour or more of him going out, coming in to tell me "That's not going to work," going back out telling me "Okay, dear, I'm going for a walk," and coming right back in to say "That's........" You get the idea. An hour later, he might have been able to take a 10 minute walk. When I go with him, we walk together to the end of the walk, but when we get back, he starts his routine again. Also, he gives me the traffic report on each round. I always hated the kids coming in and out of the house - this is much worse! The spring on our 4 year old garage door broke last year. The repairman was mystified - I wasn't!
When I saw Dianne, my counselor, Monday, we were talking about how the repetitive nature of K's behavior can be intolerable at times. I know everyone else gets tired of the same story over and over, but I hear those stories 20-30-40 times a day. Which thrown in with the walks, the traffic and the reports each time a female with a bouncing pony tail comes by, (the Track team is training right now, oh joy) it is enough to drive me crazy. But, I'm not. I've never been a terribly patient person. Okay, okay, I hear you laughing! But, somehow, from somewhere, I find the strength to be patient and really not so bothered most of the time. I know where that strength comes from and I thank God every day because I know that on my own I could never do this.
Dianne said something pretty profound this week. We were discussing K's new vanity and his heroic stories in which he is the star. Basically she said that at the end of our lives we all look back at our lives - our regrets and our failures as well as our accomplishments and successes. In K's case, his brain is dieing even though he is still physically strong. But without the frontal lobe filters, rather than regrets, he remembers his past as he wished it would have been. Although I understand this, it makes me sad. In his own right, K was heroic. He (and his brothers) overcame a disadvantaged childhood many could not. He joined the Marines during the Vietnam War and did what he felt was his duty as a citizen. He never fell for Timothy Leary's turn on, tune in, drop out retoric. When he completed his time with the Marines, he put himself through college with the GI bill, earning a degree in microbiology. He worked several different jobs early on. When I met him, he had just gotten a job with Ford Motor Co at the glass plant. Within a few years he worked his way up from taking EPA samples, sitting on top of the stack all day and then processing the samples, to being a manager in the fabrication building where tempered car windows were made. At that point, he hit the glass ceiling - he had advanced as far as he could without an engineering degree. He left Ford and went to work for a competitor, but within a year, we were back in Tulsa because they realized that it was his expertise that had kept the presses running and he was desperately needed. He crashed through the glass ceiling. and continued to advance throughout his career. K did more than he had ever expected he would when he was a young Marine. I'd say his brothers could say the same about themselves. Those were all highly intelligent young men. I know now that his Mom probably was already started down this path of dementia before I met her. I wish I had known her earlier. She must have been a hell of a mother. I knew his Dad longer - he was a quiet spoken man much like his sons. I know that he was a hard worker. And I know his son. That's enough for me to understand the quality of people they were.
It does make me sad sometimes that there are people in our lives now who never knew him before this disease started changing him.
Another idea Dianne and I came up with was to get him to start journaling orally some of his stories. We thought that it might give me a little break from his storytelling if he was busy doing this. Another back fire! He has recorded one story so far and he loves it! So much so that he will sit and play it over and over and over for me.....I tried to get him to plug in the earphones so he could hear it better (and I couldn't hear it at all). But he figured that out pretty quickly -"But then you can't hear it!" Don'cha know!!!
My DD sent me a wonderful book this past week, Dementia Caregivers Share Their Stories, A Support Group in a Book. I'll probably share some of it with you next time. I found this bit to be so helpful: "Caregivers need permission to be human and fallible. When we make mistakes during out caregiving
Thanks, DD, for a book that is bound to be a great comfort and resource! Thanks, I needed that!
Peace and love, Mary
Wednesday, March 21, 2012
Exercise is Mandatory!
Yesterday I mentioned that I wanted to take yoga or tai chi. I have a very good reason for this.
Thirteen years ago I was diagnosed with Fibromyalgia. Even now, some people, including some doctors, don't think fibro is a legitimate diagnosis and seem to believe that the people who claim to have fibro are either hypochondriacs, lazy or drug seeking. I can attest that these things are not true.
For me fibro is a set of symptoms that gets better or worse, but never goes away. The pain is always present. Before all this started with K, my pain level on a scale of 1 - 10, generally was in the 3-4 range. The pain was there, but I could function normally most days. And my normal is a lot of work! I like to work; I like to stay busy and productive. I don't like to sit and watch tv (although I can certainly sit to read a good book!). I always have found things to do - housework, yard work, spring cleaning (spring, summer, fall, winter, as well). Ask any of my kids - I have always been a clean freak! I always said that I would not be defined by the fibro; it would not dictate my lifestyle. And most of my life (I can find episodes of fibro to age 8) I have lived up to that. I tried to even hide my pain from my family to the best of my ability and didn't let my pain effect the family's activities and needs. I think I was pretty successful in that.
But fibro gets much worse with stress; and baby, I got plenty of that. On my good days my pain is 6-7, and the bad days are 9-10. The worst part of constant pain is how it effects your energy level. On a good day I can do about a third of what I used to do. On the worse days, all I can do is huddle on the couch and wait for it to get better. When it hits 10, my body takes over completely and I have to sleep. I don't take narcotics for the most part. I don't like how they effect my thinking skills, and addiction, not necessarily to the drug, but to the lessening of the pain, is a real concern. I'm not going to spend my life, any of it, walking comatose. We have gone through the entire gamit of drugs that are prescribed for fibro and I don't tolerate them well. Advil is my normal go-to drug of choice. I try to manage the rest of the pain through sleep, rest. massage, meditation and light exercise. Getting enough of the right kind of exercise is hard right now. And rest seems to be poor to nonexistent. The last time I visited with my rheumatologist, she warned me that I needed to prevent these severe flares, or I might never get better. That scares me.
I know the time is quickly approaching when I will have to find in home nursing care so that I can take time away from caregiving. Caregiving wasn't as hard when I could still see bits and pieces of my K left in new K. But that time has ended. I almost never see glimpses of K as he was before. He is still nice in his way, but he is no longer as cooperative. And we've had a couple of episodes lately, when I have seen stress building up in him that I'm afraid some time soon could erupt into violence. This is a "normal" componant of FTD, but not one I've had to be concerned with in the past. And I hope I'm wrong now, but I fear I'm not. As long as I do everything he tells me to do we're fine. But one day last week, my pain level hit 10 and I had to take a narcotic pain pill. So I called in a pizza, took a hot bath, took a pill and took me and my blanket to the couch. He wanted to go to the golf shop. Normally not a big deal, but this time, it was. I tried to explain why I couldn't take him, but his solution was for me to give him the keys to the car and he would take himself. Not possible. He doesn't have a valid driver's license any more. We went through the same 4 statements for about an hour and I was frustrated and he was frustrated. The very same scenerio happened Sunday - only this time I was cooking dinner because the kids were coming over to visit. I shortened the time frame by threatening to have my Mom come and get him so that I and the kids could visit. It didn't lower the intensity, just the time. I could not let him ruin, or cause me to cancel, my visit with the kids. I don't get to see them as often as I want already.
There are no medications for FTD. However, there are drugs that can help to control some of the behaviors. So, my dear children, before you all call and yell at me, know this. I have the phone call into his neurologist and am ordering the proper meds for this situation.
Thirteen years ago I was diagnosed with Fibromyalgia. Even now, some people, including some doctors, don't think fibro is a legitimate diagnosis and seem to believe that the people who claim to have fibro are either hypochondriacs, lazy or drug seeking. I can attest that these things are not true.
For me fibro is a set of symptoms that gets better or worse, but never goes away. The pain is always present. Before all this started with K, my pain level on a scale of 1 - 10, generally was in the 3-4 range. The pain was there, but I could function normally most days. And my normal is a lot of work! I like to work; I like to stay busy and productive. I don't like to sit and watch tv (although I can certainly sit to read a good book!). I always have found things to do - housework, yard work, spring cleaning (spring, summer, fall, winter, as well). Ask any of my kids - I have always been a clean freak! I always said that I would not be defined by the fibro; it would not dictate my lifestyle. And most of my life (I can find episodes of fibro to age 8) I have lived up to that. I tried to even hide my pain from my family to the best of my ability and didn't let my pain effect the family's activities and needs. I think I was pretty successful in that.
But fibro gets much worse with stress; and baby, I got plenty of that. On my good days my pain is 6-7, and the bad days are 9-10. The worst part of constant pain is how it effects your energy level. On a good day I can do about a third of what I used to do. On the worse days, all I can do is huddle on the couch and wait for it to get better. When it hits 10, my body takes over completely and I have to sleep. I don't take narcotics for the most part. I don't like how they effect my thinking skills, and addiction, not necessarily to the drug, but to the lessening of the pain, is a real concern. I'm not going to spend my life, any of it, walking comatose. We have gone through the entire gamit of drugs that are prescribed for fibro and I don't tolerate them well. Advil is my normal go-to drug of choice. I try to manage the rest of the pain through sleep, rest. massage, meditation and light exercise. Getting enough of the right kind of exercise is hard right now. And rest seems to be poor to nonexistent. The last time I visited with my rheumatologist, she warned me that I needed to prevent these severe flares, or I might never get better. That scares me.
I know the time is quickly approaching when I will have to find in home nursing care so that I can take time away from caregiving. Caregiving wasn't as hard when I could still see bits and pieces of my K left in new K. But that time has ended. I almost never see glimpses of K as he was before. He is still nice in his way, but he is no longer as cooperative. And we've had a couple of episodes lately, when I have seen stress building up in him that I'm afraid some time soon could erupt into violence. This is a "normal" componant of FTD, but not one I've had to be concerned with in the past. And I hope I'm wrong now, but I fear I'm not. As long as I do everything he tells me to do we're fine. But one day last week, my pain level hit 10 and I had to take a narcotic pain pill. So I called in a pizza, took a hot bath, took a pill and took me and my blanket to the couch. He wanted to go to the golf shop. Normally not a big deal, but this time, it was. I tried to explain why I couldn't take him, but his solution was for me to give him the keys to the car and he would take himself. Not possible. He doesn't have a valid driver's license any more. We went through the same 4 statements for about an hour and I was frustrated and he was frustrated. The very same scenerio happened Sunday - only this time I was cooking dinner because the kids were coming over to visit. I shortened the time frame by threatening to have my Mom come and get him so that I and the kids could visit. It didn't lower the intensity, just the time. I could not let him ruin, or cause me to cancel, my visit with the kids. I don't get to see them as often as I want already.
There are no medications for FTD. However, there are drugs that can help to control some of the behaviors. So, my dear children, before you all call and yell at me, know this. I have the phone call into his neurologist and am ordering the proper meds for this situation.
Tuesday, March 20, 2012
Keeping Active
 |
| Max and his brother Mulligan Mulligan was hit by a car after we moved here. |
We live on a busy street and two of the three schools dump traffic, walking and driving, on either side of our house. K walks on the sidewalk that passes the football and soccer fields. But, if there is anyone else on the sidewalk, he comes back to tell me he can't go because someone is out there, waits 30 seconds or so, then tries again. Sometimes he comes in and out of the house 3 or 4 times before he is actually able to go for his walk. When he comes back he tells me all about it - any cars that passed or people in the area, whether he saw our neighbors, or what our neighbors might be doing if he can't see them. This is all fine. I'm trying to walk with him a couple of times a day.
I've also tried to get him to try yoga and tai chi; Although he has enjoyed both at Alzheimer's, I just can't seem to get him to agree to give it a try. I need these for myself. I just have to make up my mind to go without him and get home health care to stay with him. I know it shouldn't, but it seems like a kind of abandonment to leave him with a stranger in our home when he wants me to me here with him all the time. I've got more work to do to get these kind of thoughts out of my mind so that I can take care of myself, so that I can take care of him.
This quote was in my daily inspirational email today: "Compassion cures the ills of isolation with its consistent love and acceptance." I am thankful for the compassion of others and pray God will give me compassion and patience in the role of caregiver.
Love and peace. Mary
Wednesday, March 14, 2012
Thankful for Small and Big Things
What a great start to my week! In my last post I was talking about how phone calls can really lift my spirits. Sunday I had calls from DD, her gorgeous (and gifted - Grandma's get to brag) daughter and #2 son, who lives in Seattle. #1 son, his lovely wife and beautiful (and obviously gifted, also - Grandma calls it as she sees it!) 3 year old daughter who has better phone skills than many teens, called me Monday just to check in. The week was starting to look pretty lousy before everyone called. After talking to all, I felt like it was a new day!
I'd like to know if other pftd (ftd speak for patients with...) were badly effected by daylight savings time.
Our Sunday started out lousy - trying to get DH ready for church - we were 5 minutes late for the service. Although he was mystified by the thought that we were late. After all, not all the clocks were set forward and Daylight Savings Time is not a concept he understands now. (Note to myself - next year make sure all clocks and watches are synchronized the night before.) Another bad decision, we went to a restaurant for breakfast afterward that we hadn't been to in a while and it was packed. So too many distractions to eat. He wasn't able to take my sister's walker away from the table to clear the aisle - even though that is usually his job. Nor was he able to retrieve it after breakfast. He was just kind of off balance and seemed confused all day. And not in a good mood. Bedtime was a struggle, as it is sometimes and we finally got to bed around 1:30a. Monday was tough, too. He stayed in bed until 1:30p; then his energy level and mine conflicted. I was beat by dinner time, he was ready to rock and roll.
This week just keeps getting better and better! I picked K up from the church where he had been helping the men pick up pizza for the homeless feeding program and took him to lunch. This is one of his favorite activities. When we got home, we had a DVD from Brian and Meg of Meredith's basketball team playing. Wow, Mere is fast! and accurate! I lost count of how many baskets Mere made. And when she took the ball down the court, no one could catch her. Thanks for sharing it with us, Brian and Meg. It was awesome. Great job, Mere! Grandpa and I loved watching it.
The news here is not great. I've been trying not to see that K is getting worse so quickly. Tonight it was hard to ignore. His memory is getting weaker. I mentioned going to Bed, Bath and Beyond and he didn't know where or what that was. I hadn't prepared dinner so I thought he would want to go to one of his favorite restaurants, but he didn't - just wanted a Weight Watchers frozen dinner. Then at dinner, Fox News was on and they were talking about a political action committee that has been the absolute bane of his existence for the last few years. I mean seriously, hearing the name would send him into a rampage just last year. But tonight he turned to me and asked me what it was. He really didn't know. I seem to lose him a piece at a time. It is hard to be "up" for him all the time, but I try. The true blessing in this is that he doesn't know how he is changing - at least not all the time. At times, I think he catches glimpses of what is happening, and is frightened and sad. I thank God that those don't come often.
And I thank God for each of you. Love and Peace to you all. Mary
I'd like to know if other pftd (ftd speak for patients with...) were badly effected by daylight savings time.
Our Sunday started out lousy - trying to get DH ready for church - we were 5 minutes late for the service. Although he was mystified by the thought that we were late. After all, not all the clocks were set forward and Daylight Savings Time is not a concept he understands now. (Note to myself - next year make sure all clocks and watches are synchronized the night before.) Another bad decision, we went to a restaurant for breakfast afterward that we hadn't been to in a while and it was packed. So too many distractions to eat. He wasn't able to take my sister's walker away from the table to clear the aisle - even though that is usually his job. Nor was he able to retrieve it after breakfast. He was just kind of off balance and seemed confused all day. And not in a good mood. Bedtime was a struggle, as it is sometimes and we finally got to bed around 1:30a. Monday was tough, too. He stayed in bed until 1:30p; then his energy level and mine conflicted. I was beat by dinner time, he was ready to rock and roll.
This week just keeps getting better and better! I picked K up from the church where he had been helping the men pick up pizza for the homeless feeding program and took him to lunch. This is one of his favorite activities. When we got home, we had a DVD from Brian and Meg of Meredith's basketball team playing. Wow, Mere is fast! and accurate! I lost count of how many baskets Mere made. And when she took the ball down the court, no one could catch her. Thanks for sharing it with us, Brian and Meg. It was awesome. Great job, Mere! Grandpa and I loved watching it.
The news here is not great. I've been trying not to see that K is getting worse so quickly. Tonight it was hard to ignore. His memory is getting weaker. I mentioned going to Bed, Bath and Beyond and he didn't know where or what that was. I hadn't prepared dinner so I thought he would want to go to one of his favorite restaurants, but he didn't - just wanted a Weight Watchers frozen dinner. Then at dinner, Fox News was on and they were talking about a political action committee that has been the absolute bane of his existence for the last few years. I mean seriously, hearing the name would send him into a rampage just last year. But tonight he turned to me and asked me what it was. He really didn't know. I seem to lose him a piece at a time. It is hard to be "up" for him all the time, but I try. The true blessing in this is that he doesn't know how he is changing - at least not all the time. At times, I think he catches glimpses of what is happening, and is frightened and sad. I thank God that those don't come often.
And I thank God for each of you. Love and Peace to you all. Mary
Thursday, March 8, 2012
Thinking Time
I don't know about anyone else, but I do a lot of thinking when I'm vacuuming. Can't hear the tv, can't hear the telephone. Gives me probably the longest uninterrupted block of time I can get now. So, yesterday I was vacuuming (read as thinking) and these are some of the things I was thinking about.
One of the biggest issues with being a full time caregiver (24 hours, not 8, like most full timers) is loneliness. Well, loneliness and exhaustion. Everyone from the doctors to the mailman say, "Take care of yourself; take time for yourself; On airplanes you always put the mask on yourself before the baby (my favorite)." I'd love to. I try to. But the reality of the situation is that K (hubby) really doesn't do well alone for long blocks of time. I actually have gotten invitations from friends to go to gatherings - for me. Not for us. I'd love to. Try explaining that to someone who can't understand that I occasionally need to go to the doctor alone. He really is totally unaware that he is not the same person that our friends have known for years.
I have tried to get time for myself - I spent a month interviewing Adult Day Centers and finally decided that the Alzheimer's Day Center was the best possible situation for K, even though he would not stay for more than 2 hours at a time. Two hours that I spent at the library immersing myself in art books and enjoying the quiet. That lasted a month. Then K refused to return. I don't know why, he can't explain it beyond "I don't want to go; No, I won't go." When he says no to something, try to get him to change his mind. The best I and the director can come up with is to take a break and try again later, which I will. I miss those 2 hours, 2 days a week. It was like a mini-vacay for me. I can sympathize with K, though. Everyone else in the Day Center has Alzheimer's. K paces, but with intention, not just wandering around. You can't put him in a chair and have him participate in "discussions," or do all his exercise in a chair. He has very limited ability to follow conversation now. He just wants to tell "his stories" over and over.
People really don't understand why I don't always do the things they want me to do, or the things they think I should do. I try, truly I do. But the stress of the situation has effected my memory and my energy in dramatic ways. When we go out, I have to constantly be aware of where he is. If I have even a short lapse of attention, he can be gone. We do go out and do things - museums, plays, concerts or just shopping and he loves to go. But for me those are times of heightened stress - I never really know how things are going to go. But he is usually ready to leave long before the play is over, or I am ready to leave. Even going to visit people is like having a four year old saying every couple of minutes I'm ready to go now. When we're at home, it's a little better. But if others have heard his story 10 times, I've heard it 50 times. It can be exhausting having someone talk non-stop AT you. Anyone who has raised a toddler can agree with that.
People have the best of intentions and I hear a lot "I'll do anything you need me to do." What I need is a break from the loneliness - a telephone call, a visit, a card. Anything that lets me know that people are thinking of us. I know in my heart they are. They may think oh, she has enough going on, she's probably too busy, too tired to talk. But those are the very things that renew me. I don't have conversations in my own home anymore. K isn't capable of discourse any more.
If someone was going into this situation from the beginning and needed advice, I'd say - the most important thing you will need is a support system. God truly has blessed us with all the professional support we will need for the long haul. We have a wonderful PCP, thanks to our daughter-in-law; wonderful attorney who specializes in just this situation; some of the best specialists in the US; personally I have a compassionate and knowledgeable counselor and a massage therapist who not only keeps my body moving, but also listens with a loving ear. In addition she has a sister who works in this field and now does home health care for Alzheimer's and dementia patients. So I have a contact to get a recommendation for home health care. I've also been blessed with a wonderful family. I need them more now than I ever have and I know that they are always there for me. All I have to do is see or hear from one of the grandkids to light me back up and keep me smiling for the day.
Well, I've gone on and on today. I'm trying not to whine, but if you have someone in your life who really doesn't know how to help you, use this mess as the conversation starter. Many, many caregivers on the support groups write these same things time and time again.
I think I'll go vacuum. Love and peace. Mary
One of the biggest issues with being a full time caregiver (24 hours, not 8, like most full timers) is loneliness. Well, loneliness and exhaustion. Everyone from the doctors to the mailman say, "Take care of yourself; take time for yourself; On airplanes you always put the mask on yourself before the baby (my favorite)." I'd love to. I try to. But the reality of the situation is that K (hubby) really doesn't do well alone for long blocks of time. I actually have gotten invitations from friends to go to gatherings - for me. Not for us. I'd love to. Try explaining that to someone who can't understand that I occasionally need to go to the doctor alone. He really is totally unaware that he is not the same person that our friends have known for years.
I have tried to get time for myself - I spent a month interviewing Adult Day Centers and finally decided that the Alzheimer's Day Center was the best possible situation for K, even though he would not stay for more than 2 hours at a time. Two hours that I spent at the library immersing myself in art books and enjoying the quiet. That lasted a month. Then K refused to return. I don't know why, he can't explain it beyond "I don't want to go; No, I won't go." When he says no to something, try to get him to change his mind. The best I and the director can come up with is to take a break and try again later, which I will. I miss those 2 hours, 2 days a week. It was like a mini-vacay for me. I can sympathize with K, though. Everyone else in the Day Center has Alzheimer's. K paces, but with intention, not just wandering around. You can't put him in a chair and have him participate in "discussions," or do all his exercise in a chair. He has very limited ability to follow conversation now. He just wants to tell "his stories" over and over.
People really don't understand why I don't always do the things they want me to do, or the things they think I should do. I try, truly I do. But the stress of the situation has effected my memory and my energy in dramatic ways. When we go out, I have to constantly be aware of where he is. If I have even a short lapse of attention, he can be gone. We do go out and do things - museums, plays, concerts or just shopping and he loves to go. But for me those are times of heightened stress - I never really know how things are going to go. But he is usually ready to leave long before the play is over, or I am ready to leave. Even going to visit people is like having a four year old saying every couple of minutes I'm ready to go now. When we're at home, it's a little better. But if others have heard his story 10 times, I've heard it 50 times. It can be exhausting having someone talk non-stop AT you. Anyone who has raised a toddler can agree with that.
People have the best of intentions and I hear a lot "I'll do anything you need me to do." What I need is a break from the loneliness - a telephone call, a visit, a card. Anything that lets me know that people are thinking of us. I know in my heart they are. They may think oh, she has enough going on, she's probably too busy, too tired to talk. But those are the very things that renew me. I don't have conversations in my own home anymore. K isn't capable of discourse any more.
If someone was going into this situation from the beginning and needed advice, I'd say - the most important thing you will need is a support system. God truly has blessed us with all the professional support we will need for the long haul. We have a wonderful PCP, thanks to our daughter-in-law; wonderful attorney who specializes in just this situation; some of the best specialists in the US; personally I have a compassionate and knowledgeable counselor and a massage therapist who not only keeps my body moving, but also listens with a loving ear. In addition she has a sister who works in this field and now does home health care for Alzheimer's and dementia patients. So I have a contact to get a recommendation for home health care. I've also been blessed with a wonderful family. I need them more now than I ever have and I know that they are always there for me. All I have to do is see or hear from one of the grandkids to light me back up and keep me smiling for the day.
Well, I've gone on and on today. I'm trying not to whine, but if you have someone in your life who really doesn't know how to help you, use this mess as the conversation starter. Many, many caregivers on the support groups write these same things time and time again.
I think I'll go vacuum. Love and peace. Mary
Monday, March 5, 2012
Busy, busy, busy (and tired)
It's been a while since the last post, but we have been busy. February 25 our DD came up to visit and brought her youngest baby. We have enjoyed a fairly mild winter this year; I've been somewhat disappointed with the lack of snow. DD does NOT enjoy snow or winter of any kind and lives in Oklahoma where snow is a major disaster accompanied by an immediate shortage of milk and bread. So, of course, we had a forecast of 2 to 7 inches of snow for the Saturday she came in! It was snowing when she landed, but fortunately we just got an inch or so. Still it was cold and that was hard enough on her! Anyway, we had a wonderful visit. Love her; love her sweet baby.
DD and her dad never were close as she was growing up. Dh was a perfectionist and somewhat stand-offish (okay, very hands off with the kids), and I don't think any of our kids consider him to have been very close to them. He loved them all dearly, but was never very "touchy-feely." Not even with me. Anyway, DD is enjoying a close relationship with Dad for the first time in her life. Dh is much more approachable now. He seems happier than he has ever been in his life. Dh's joy in life right now is telling "his stories," and he can tell that she wants to hear them and truly enjoys him. As we were dropping her off at the airport, she asked her Dad for a hug and he jumped up to give her a big hug. He has told everyone he sees that his daughter asked him for a hug and told him he is so funny. You can see in his eyes how delighted he is with his daughter and he is proud of her, maybe for the first time.
It is heartwarming to see them enjoying each other. She taught me a huge lesson this visit. I need to let go of all the concerns and responsibilities and just spend time enjoying my husband while I can. I've been thinking about my current life a lot lately. Strangely enough, it was a book I read that first started me thinking. In the story a young woman was raped by the husband of her best friend and found herself pregnant as a result. She made the decision to have the baby, but to give her up to adoption without ever seeing the baby. She denied even to herself the existence of the pregnancy and refused to feel the baby kick. Her "life" ended at that moment. All she could think of was when the baby was finally born, her life could begin again. Ultimately her attitude gradually changed and she came to love her daughter.
I realized that like the young lady in the book, I had allowed myself to think my life was on hold, from the day dh was diagnosed. I'm starting (baby steps) to try to resume my life outside of this disease that has taken hold of our household. I found a new book that I am going to work through. It is called life is a verb - 37 Days to Wake Up, Be Mindful, and Live Intentionally. (There is the most wonderful poem, "Lost and Found," at the beginning that was written by David Hollies, who was diagnosed with Alzheimer's. I would love to quote it here - but...I don't want to anger the copyright gods. I'll email the author and see if I can get permission.) Anyway, this is a workbook to change your outlook through daily challenges - Actions and Movement (as in, movement toward living your life with intention). The actions are frequently free writings, which I haven't done since college, but enjoyed then. The daily readings have wonderful titles like "Dance in your car," "Carry a small grape," and "Consider the flea." Those titles appeal to a certain randomness I'm feeling right now.
The idea of living with intention has been popping up around me lately. I picked up a book at my counselor's office by Dr. Wayne Dyer that proposed the thought that intention is the primary force of life. Then I picked up life is a verb at JoAnn's, of all places, and was intrigued by it. I actually walked away from it and had to go back to buy it the next day when I couldn't stop thinking about it. It shouldn't have been at JoAnn's - although it looks crafty, after reading the first two chapters, it is obviously not a craft book. I think it was there especially for me.
Well, this has gotten long. Gotta go. Love and peace to all.
DD and her dad never were close as she was growing up. Dh was a perfectionist and somewhat stand-offish (okay, very hands off with the kids), and I don't think any of our kids consider him to have been very close to them. He loved them all dearly, but was never very "touchy-feely." Not even with me. Anyway, DD is enjoying a close relationship with Dad for the first time in her life. Dh is much more approachable now. He seems happier than he has ever been in his life. Dh's joy in life right now is telling "his stories," and he can tell that she wants to hear them and truly enjoys him. As we were dropping her off at the airport, she asked her Dad for a hug and he jumped up to give her a big hug. He has told everyone he sees that his daughter asked him for a hug and told him he is so funny. You can see in his eyes how delighted he is with his daughter and he is proud of her, maybe for the first time.
It is heartwarming to see them enjoying each other. She taught me a huge lesson this visit. I need to let go of all the concerns and responsibilities and just spend time enjoying my husband while I can. I've been thinking about my current life a lot lately. Strangely enough, it was a book I read that first started me thinking. In the story a young woman was raped by the husband of her best friend and found herself pregnant as a result. She made the decision to have the baby, but to give her up to adoption without ever seeing the baby. She denied even to herself the existence of the pregnancy and refused to feel the baby kick. Her "life" ended at that moment. All she could think of was when the baby was finally born, her life could begin again. Ultimately her attitude gradually changed and she came to love her daughter.
I realized that like the young lady in the book, I had allowed myself to think my life was on hold, from the day dh was diagnosed. I'm starting (baby steps) to try to resume my life outside of this disease that has taken hold of our household. I found a new book that I am going to work through. It is called life is a verb - 37 Days to Wake Up, Be Mindful, and Live Intentionally. (There is the most wonderful poem, "Lost and Found," at the beginning that was written by David Hollies, who was diagnosed with Alzheimer's. I would love to quote it here - but...I don't want to anger the copyright gods. I'll email the author and see if I can get permission.) Anyway, this is a workbook to change your outlook through daily challenges - Actions and Movement (as in, movement toward living your life with intention). The actions are frequently free writings, which I haven't done since college, but enjoyed then. The daily readings have wonderful titles like "Dance in your car," "Carry a small grape," and "Consider the flea." Those titles appeal to a certain randomness I'm feeling right now.
The idea of living with intention has been popping up around me lately. I picked up a book at my counselor's office by Dr. Wayne Dyer that proposed the thought that intention is the primary force of life. Then I picked up life is a verb at JoAnn's, of all places, and was intrigued by it. I actually walked away from it and had to go back to buy it the next day when I couldn't stop thinking about it. It shouldn't have been at JoAnn's - although it looks crafty, after reading the first two chapters, it is obviously not a craft book. I think it was there especially for me.
Well, this has gotten long. Gotta go. Love and peace to all.
Subscribe to:
Comments (Atom)